Breast cancer for the under-50s

Breast cancer is far less common in the under-50s, but this can leave younger people with a diagnosis feeling isolated. This group is a place for them to come together, share experiences and support each other.

Premenopausal tamoxifen battles and hormone levels

Messaline
Posted by

I wonder - do I really need to take Tamoxifen?  I’ve been recommended to come off it for 6 weeks (depression) to give my wretched body and soul a chance to recoup.  I had lobular cancer which developed after IVF (no official link with IVF but with HRT) from which I suffered terrible side effects and only had to take in the first place due to partner.

I’ve had a double mastectomy (multiple tumours in both breasts) sentinel node check - one clean, one with single microscopical cells, most probably resulting from multiple biopsies (so clinically clean).

Tamoxifen gives me debilitating depression, skin disorders, hair loss, various other stuff and is now rotting my teeth at an alarming rate of knots! I deliberately lost 10kg of weight through controlled nutrition which I understand from the stats will be of more benefit than the Tamoxifen!!! Additionally my nutrition has been carefully geared towards controlling oestrogen levels.  I feel quite confused that the actual % of difference Tamoxifen makes is often mis-represented to patients.  Despite seeing figures of 30-50% it only makes very low single digit % differences of stopping recurrence for me!  

I have had my trust in the cancer treatment system somewhat dented - initially I was told that because of the number and size of my tumours I would be offered chemotherapy.  I questioned this because I already knew and could reference from current published research (due to my background I have access to peer reviewed academic journals and papers) that chemotherapy would have been ineffective and counter-productive for me with my particular type and stage of lobular breast cancer.  I was then told that actually it shouldn’t be recommended.  Phew! 

There is enough scientifically validated research to really improve cancer pathways but I feel treatment protocols can force treatment decisions that are not ideal and individual tailored treatments can be overlooked in favour of blanket procedures.  

Also, can anyone tell me - with hormonal cancer (I’m 100% responsive to oestrogen and progesterone) why on earth is no-one measuring hormone levels and regularly???  I actually think it would do women a world of good to have their hormone levels monitored throughout their lives.  I have been lucky, seem to have found a Doctor whose first questions to me in regards to my cancer were about my hormone levels, measuring them, how they’ve changed (which I couldn’t respond to as only just started doing this myself after failing to arouse interest of anyone else).  Am baffled though, treatment seems to be a little fluctuating depending on the Doctor found.  With the current news stories of how our survival rates are lower than our European/world counterparts it appears amongst other things that people are going undiagnosed or recurrence is missed until too late.   

My treatment was in January this year (2018) and in June I was literally told I only need to come back if the cancer should return.  I really had to laugh.  

                                 
                                 
Helsjw
Posted by

Well said - i also wonder about the things you have posted. But i am willing to do anything even just for a tiny improvement in outcome x   

Messaline
Posted by

Hi there Helsjw,

Just wondered do you have ductal or lobular breast cancer?  The two are often lumped together - excuse the pun ;-)  and treated the same when they are actually quite different in their clinicopathological characteristics as well as their differing responses to systemic therapy.

Messaline x

                                 
                                 
Helsjw
Posted by

Hi Messaline, Mine was ductal. 

lily0403
Posted by

Mine was lobular. Both breasts spread to the bones. I am taking tamoxifen and denosumab. The cancer is now stable. My mum had ductal and no spread. She has been clear 8 yrs now. Xx

Messaline
Posted by

Hi there Lily 0403,

Good news about your mum.  How did you find out your cancer had spread to the bones?  Had it already spread at primary diagnosis?  

How are you coping with the medication?  Poor you on two lots - I’m falling apart on Tamoxifen although was started off on Zoladex, bisphosphonates and Aromatase inhibitors. It’s all quite bewildering... 

Messaline x

                                 
                                 
lily0403
Posted by

It had already spread at primary stage. Im ok on the medication im lucky enough not to have had chemo as there isnt much it can do to the bone. The tamoxifen keeps it stable and denosumab stops the bones breaking easily. I find keeping busy helps my mental state. I enjoy knitting at the moment. Xx